ddcrook Posted June 10, 2020 Share Posted June 10, 2020 Let's say a member of your family tells you that they tested positive for a genetic mutation and you have a 50% chance of having it. Without intervention, this mutation would give a woman a higher than 50% chance of developing breast cancer and a 20% chance of ovarian cancer. A man with this mutation has a 30% chance of develping prostate cancer- usually an agressive form of prostate cancer. Both women and men have a 6% chance of pancreatic cancer and an increased chance of melanoma. If you have the mutation, each of your children would also have a 50% chance of having it. People who are identified with this mutation would have have increased cancer screenings such as alternating MRIs and mammograms and may choose to have surgeries (mastecotomy and oopherectomy) to greatly decrease the risk of some of these cancers. Would you get tested? What are some reasons a person would choose not to get tested? Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted June 10, 2020 Share Posted June 10, 2020 I would get tested. 3 Quote Link to comment Share on other sites More sharing options...
EmseB Posted June 10, 2020 Share Posted June 10, 2020 If someone would decline treatment or prophylactic removal of reproductive organs or breasts, they may feel that they could have better mental health not knowing. IOW, knowing or not knowing wouldn't change what they would do, so not knowing is easier. 2 Quote Link to comment Share on other sites More sharing options...
J-rap Posted June 11, 2020 Share Posted June 11, 2020 I would absolutely want to know, and in fact, I did want to know and I've had the genetic testing. I have increased MRI and mammogram screenings. I do want to stay on top of things if I can. Why not? 1 Quote Link to comment Share on other sites More sharing options...
ddcrook Posted June 11, 2020 Author Share Posted June 11, 2020 14 minutes ago, Seasider too said: BRACA? I would absolutely get tested. Yes, BRCA. Quote Link to comment Share on other sites More sharing options...
ddcrook Posted June 11, 2020 Author Share Posted June 11, 2020 25 minutes ago, EmseB said: If someone would decline treatment or prophylactic removal of reproductive organs or breasts, they may feel that they could have better mental health not knowing. IOW, knowing or not knowing wouldn't change what they would do, so not knowing is easier. I've thought of this, but wouldn't the person still have anxiety knowing that they could possibly have the risks? I'm not arguing with you. I can almost see how someone could choose this. Also, while the doctors would certainly recommend removal of the ovaries once a woman reaches a certain age, they are supportive of a woman who chooses agressive screening over prophylactic mastectomy. At least that has been what I have seen. Quote Link to comment Share on other sites More sharing options...
kbutton Posted June 11, 2020 Share Posted June 11, 2020 22 minutes ago, CuriousMomof3 said: Unfortunately, genetic discrimination is a problem, and while there are currently laws that prohibit genetic discrimination by employers of more than 15 people, or by health insurers, there isn't protection for life, disability or long-term care insurance, or for employers with less than 15 employees. There also are political efforts underway to remove protections for other forms of preexisting condition, so people may legitimately worry that the protections that are in place may change. ETA: I'm not saying this is a reason I wouldn't get tested. I almost certainly would. I've seen what losing a parent can do to a child, and I'd do almost anything to protect my kids from that. I'm just saying this a reason someone might have. This. Secondly, not having a good relationship with doctors. Thirdly, not having a clear picture of what prevention and extra vigilance is going to look like or not knowing if that vigilance is likely to pay off. I have a friend that recently had testing for something like this, but she was also given better resources for how to handle this information than I've ever been given from a physician. I am one of those people that tends to have super terrible relationships with doctors in spite of being married to someone in healthcare. Maybe fourthly, having seen intervention go overboard--not so much once something is diagnosed, but with screenings--being pushed into preventive surgery a person is not comfortable with or lots of extra biopsies (some are not a picnic). 1 Quote Link to comment Share on other sites More sharing options...
happi duck Posted June 11, 2020 Share Posted June 11, 2020 My late sister had a mutation. I was tested so my kids would know (no mutation). I'm not sure I would've wanted to know if I didn't have kids. Idk why. One of my nieces doesn't want to know. Quote Link to comment Share on other sites More sharing options...
ddcrook Posted June 11, 2020 Author Share Posted June 11, 2020 2 minutes ago, kbutton said: This. Secondly, not having a good relationship with doctors. Thirdly, not having a clear picture of what prevention and extra vigilance is going to look like or not knowing if that vigilance is likely to pay off. I have a friend that recently had testing for something like this, but she was also given better resources for how to handle this information than I've ever been given from a physician. I am one of those people that tends to have super terrible relationships with doctors in spite of being married to someone in healthcare. Maybe fourthly, having seen intervention go overboard--not so much once something is diagnosed, but with screenings--being pushed into preventive surgery a person is not comfortable with or lots of extra biopsies (some are not a picnic). I am so sorry that you have terrible relationships with doctors. I really wish some doctors would realize the long-lasting damage they can inflict. It doesn't cost them anything to be kind and respectful and listen to their patients. Yes to the bolded. The genetic counselors do seem to do a great job of explaining everything. 1 Quote Link to comment Share on other sites More sharing options...
Arcadia Posted June 11, 2020 Share Posted June 11, 2020 (edited) 24 minutes ago, ddcrook said: Yes, BRCA. I opted out. I was already diagnosed with breast cancer. We didn’t want the results of the BRCA to make oncologists and surgeons push for the most invasive surgery. Without the BRCA results, the cancer team was more willing to consider the least invasive lumpectomy versus a mastectomy. My oncologist is rather open minded. He was advocating port and wig for chemotherapy but he did not insist. He and my surgeon were pleasantly surprised that I didn’t need a port. I change medical providers because the first healthcare group has oncology surgeons that are pro mastectomy as first choice, and strongly recommended genetic testing. They would give “textbook answers” on reducing risks. Feels more like they are protecting themselves from liability and also increasing their revenue. Edited June 11, 2020 by Arcadia 1 Quote Link to comment Share on other sites More sharing options...
ddcrook Posted June 11, 2020 Author Share Posted June 11, 2020 Just now, Arcadia said: I opted out. I was already diagnosed with breast cancer. We didn’t want the results of the BRCA to make oncologists and surgeons push for the most invasive surgery. Without the BRCA results, the cancer team was more willing to consider the least invasive lumpectomy versus a mastectomy. Does anyone else in your family have a BRCA mutation? Quote Link to comment Share on other sites More sharing options...
ddcrook Posted June 11, 2020 Author Share Posted June 11, 2020 45 minutes ago, happysmileylady said: For me it would depend on age and overall situation. A person who is elderly, has other conditions, might be of a mind not to treat should they be diagnosed with such a thing, so they might not chose to know. I can certainly see why an elderly person would not find the information useful. I would hope that the person would still inform their children so they could decide if they want to be tested. Quote Link to comment Share on other sites More sharing options...
Arcadia Posted June 11, 2020 Share Posted June 11, 2020 1 minute ago, ddcrook said: Does anyone else in your family have a BRCA mutation? None in my family had genetic testing. I am the only one with breast cancer out of almost a hundred adult relatives (maternal and paternal). My dad is the youngest of 8 kids. 1 Quote Link to comment Share on other sites More sharing options...
ddcrook Posted June 11, 2020 Author Share Posted June 11, 2020 52 minutes ago, J-rap said: I would absolutely want to know, and in fact, I did want to know and I've had the genetic testing. I have increased MRI and mammogram screenings. I do want to stay on top of things if I can. Why not? Yes, I was tested after I developed tumors in both breasts. The positive result came as a shock. One of my sisters chose to be tested immediately. After her positive result, her three daughters were tested. Two are positive. We wish we didn't have this, but we are glad we know. We are making choices to stay on top of it. We feel empowered. It is hard for me to understand why someone wouldn't want to know. I appreciate the insights people have shared here. 1 Quote Link to comment Share on other sites More sharing options...
Arcadia Posted June 11, 2020 Share Posted June 11, 2020 https://ww5.komen.org/BreastCancer/BRCA1andBRCA2.html “The table below shows the prevalence of BRCA1/2mutations in women diagnosed with breast cancer by ethnic group (in alphabetical order). Prevalence of BRCA1/2 mutations among U.S. women with breast cancer by ethnic group (in alphabetical order) BRCA1 BRCA2 African-American 1% 3% Ashkenazi Jewish 8-10% Data not available Asian-American Less than 1% Data not available White (non-Ashkenazi Jewish) 2-3% 2% Hispanic 4% Data not available Adapted from National Cancer Institute materials and Malone et al. [28,180]. ... Note these risks are not 100 percent. Many women with a BRCA1/2 mutation will never have breast cancer [29-31]. A combination of factors likely causes breast cancer. BRCA1/2 mutations are thought to explain a large portion of hereditary breast cancers [28]. Most breast cancers, however, are not related to inherited gene mutations.” Quote Link to comment Share on other sites More sharing options...
Katy Posted June 11, 2020 Share Posted June 11, 2020 I did. Breast, ovarian, and colon cancer strongly run up my maternal line, but none of us have BRCA. Maybe some other genetic thing that isn't yet discovered. 1 Quote Link to comment Share on other sites More sharing options...
Carol in Cal. Posted June 11, 2020 Share Posted June 11, 2020 I'd be concerned about being unable to get various kinds of insurance, and maybe employment. I'd probably only get the test if I was beyond worrying about that. My grandfather had a set of first cousins that all got and died of aggressive breast cancer. Their daughters mostly got it, too. If I were in that direct line I might get tested, but probably not. I'd probably just get the preventative treatment on the assumption that it's such a strong family thing that better safe than sorry. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted June 11, 2020 Share Posted June 11, 2020 1 hour ago, ddcrook said: I am so sorry that you have terrible relationships with doctors. I really wish some doctors would realize the long-lasting damage they can inflict. It doesn't cost them anything to be kind and respectful and listen to their patients. Yes to the bolded. The genetic counselors do seem to do a great job of explaining everything. Thanks! It's been bad enough that I've literally weighed whether I want to live longer or keep my dignity. I currently need a GP, sigh, and I have determined that once I try one out, I will walk out if the doctor is unkind. Not sure what to do if they are useless (I technically have a family doctor, but she is totally useless). If a nurse is bullying, I will bring it up with the doctor, and I am unlikely to stay in that practice--I have been bullied by one nurse and sort of bullied by another. I try to keep in mind that a nurse saved my life too, but the negative interactions were very frequent. Genetic counselors are great. My son has a serious genetic condition (but thankfully treatable, and with treatment can expect a normal life span), and his care team has been fantastic. 1 Quote Link to comment Share on other sites More sharing options...
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